Dr Bansal consultation

[godlovesatrier]

Oh and I forgot to say that my most recent samples are statistically significant, I started to feel better in June and that correlates with an uptick in the three biomarkers. I felt even better in July, so expect the biomarkers to look better when I get those results.

 

[Judee]

Just read this on Wikipedia on their page for Khellin:
https://en.wikipedia.org/wiki/Khellin

When ammi visnaga extract is taken daily, as a tea or as a pill, calcium oxalate kidney stone formation is inhibited, making it a good treatment for hyperoxaluria (a condition in which there is excessive oxalate excretion in the urine, causing kidney stones). Khellin was thought to slow or prevent calcium oxalate nucleation, preventing stones from forming. However, studies have shown that khellin is not the active ingredient in Ammi Visnaga extract. Upon studying calcium oxalate nucleation, ammi visnaga extract as a whole was shown to prolong nucleation time as well as change stone conformation, while khellin alone had no effect.[8][9]

Of course, research it a bunch.

 

[godlovesatrier]

Really interesting

 

[frogsquid13]

Do you think it’s worth seeing Dr Bansal if I don’t have any virus or immune system symptoms? I have an appt booked with him on the 28th of March. Wondering if it’ll be worth it if he’s primarily an immunologist

 

[godlovesatrier]

Yes he has a variety of treatments. But ME is all trial and error so he does follow that school of thought. Therefore he may give you antivirals as a first attempt. Just because they've shown some efficacy. Same with abilify.

I am personally trying to get the NHS to fulfil my prescription requests but they've tried to block that yesterday. Not sure why. At any rate to save money I don't think I'll follow up with Dr Bansal unless a new drug or treatment becomes available.

I think I've exhausted treatment options at this point. There are tons of options but I don't have POTS or autoimmunity. There are very few treatments for fatigue and brainfog. I've had more luck with supplements and microbiome support :/

 

[frogsquid13]

Yes the microbiome route seems interesting. Do you know if there’s any threads here for beginners, I’m wondering stuff like what’s the best website or company for testing microbiome, how to analyse those results, what best probiotic to use etc.

 

[godlovesatrier]

Not sure myself, worth a search. But you want a microbiome test from biomesight.com to assess your microbiome state. Then check your firmicute level, if it's 30% it's very likely you have a high level of inflammatory bacteria in your gut, which for me anyway has contributed to my ME. I got my firmicutes to 70% at the start of the year and then I had multiple crashes and have yet to get them back to a good place. I think at this point I'd have to take antibiotics for awhile to recover.

 

[Judee]

I’m wondering stuff like what’s the best website or company for testing microbiome, how to analyse those results, what best probiotic to use etc.

Not exactly an easy site to use but I like Ken Lassessen's website https://cfsremission.com/

 

[InitialConditions]

How does the private prescription work with Dr Bansal? Does he email them to you. I have not heard anything from him in nearly a week since my appointment.

 

[godlovesatrier]

@InitialConditions he posts it sadly comms here isn't great, it takes 2 weeks to arrive (max). You then take it to the pharmacy to pay for it.

If you don't recieve it after 2 weeks, you can call the number you originally did to chase it. He must be seeing thousands of people, I am fairly sure he has no help. Good luck!

 

[InitialConditions]

I dont think he even has my address (?)

 

[godlovesatrier]

You would have given it to his secretary when you booked in....I think. There the reception people at the hospital. Give them a call if you have spoons they can confirm your address, I think I had to change mine with them once.

 

[InitialConditions]

It was all virtual. I will email him.

 

[bertiedog]

@godlovesatrier I was wondering if you have had a chance to read the thread A Gut-Immune-Energy Model: Pt. II – The Armin Alaedini Interview and the comments following it?

I have posted a few rather lengthy replies of the very recent research I have been reading by Lucy Mailing PhD who has been studying the effects of leaky gut leading to endotoxins escaping into the bloodstream and how it basically messes up our microbiome which is then damaged leading to a situation where it is extremely difficult to get healthy again.

The key player is oxygen or rather a desirable hypoxic colon and in order for this to happen butyrate is essential as it feeds the colonocytes in the colon so that good bacteria can thrive and pathogens don't. This will enable the endothelim to be healthy and we won't then get leaky gut. She has done an amazing post which is extremely long but so full of explanations as to what happens when oxygen leaks into the colon and leaky gut arises. Here is the link to the article -

https://www.lucymailing.com/the-oxygen-gut-dysbiosis-connection/

I also use Biomesight but I have never had my butyrate producers higher than around 32 per cent but I also have the negative side of this which is lots of Proteobacteria, which are all pathobionts with several being Enterobacteria including many nasties. She explains what these Proteobacteria do to the body in a way I haven't read before. I think I am possibly an extreme case because of the Campylbacter poisoning I had in 1998 only 18 months before I could no longer work and I had my diagnosis of ME/CFS.

It looks like you have had periods of almost remission, something I never have had so it might well be that if you felt it right that some of her suggestions could get you onto a much better path. I have been taking sodium butyrate for a few months now but not really at very high doses and not the Tributyrin she recommends which I have ordered from Amazon today. (she doesn't have any links to the few products she mentions).

I have been working on getting these Proteobacteria reduced since August of this year and I have managed to change some of my symptoms especially the constipation I have been suffering very badly with and I am noticing a change in my energy level, especially my brain. It's started to work far better than for a long time as I have definitely been suffering with brain fog for several years and wasn't remember very well things that I had been reading.

I won't go on any longer but I have literally been stunned by what I have read in this article because when I look at my July Biomesight results I indeed have practically all the negative stuff that she says compromises the working of our microbiome. The main things I have done since July are achange in my diet to cut down on fats, intoduce a lot more variety of fibres, especially beans and peas (this is only very recent) and I take FOS up to 15 gm some days, other days less so, added in Pommegranate Peel, Cinnamon, Artichoke powder and I have lots of organic oats plus oat bran plus a few probiotics known for improvement in the gut.

Good luck on all that you are doing.

Pam

 

[godlovesatrier]

Hi Pam,

I've been doing all of the dietary adjustments you have introduced since probably about June. Problem is I had a lot of missteps as well. Chanca piedra, resveratrol, lauricidin, andrographis, even one dose of these things will destroy progress, literally decimates prausnitzii and kills off most bifido and lactobacillus. Just an fyi gotta be SO careful if you feel better, because the wrong change can really mess it up.

I haven't felt as good as I did earlier in the year quite yet, am still waiting for that to happen.

Lucy is kind of going along the same lines as https://pubmed.ncbi.nlm.nih.gov/19112401/ M Maes. Who has tons of papers about LPS trans location. I believe its the LPS bacteria ultimately that puts us into a significantly stronger state of health and this is also amongst the hardest to achieve. But it's not that difficult, you just have to reduce fats, red meat and get 30 to 40g of fibre a day. Eating black eyed beans will dramatically increase prausnitzii and bromii will respond to pinto beans. I don't have rectale sadly. Modulating prausnitzii has had and continues to have dramatic effects on my health.

I recently found out that adding vivomixx in helps to stabilise my baseline, less brainfog more mental energy less PEM and more physical energy. I believe butyrate, LPS and firmicute modulation WITH vivomixx for bifido and lactobacillus not to mention its effects on overgrowths should get me to a good place.

Getting to a good place can take 4 months it's a very slow process.

When people talk about taking akkermansia but they have akkermansia already I get confused, just feed the akkermansia. When they talk about taking butyrate it's hugely important to grow what you've got instead, recatale, bromii, prausnitzii. Grow those and you'll have butyrate without major issues.

The thing is in my exp when I felt 90% better my firmicutes were so high I was in obesity territory, that doesn't bother me but it's important because doctors would tell me my firmicutes to bacteroidetes ratio was unhealthy.

Careful witht he oat bran, that can actually send you in the other direction, lots of bacteroidetes like oat bran also when I took oat bran in large doses, I saw (to my knowledge anyway) no major difference in a chronic shortage on butyrate/LPS levels. Oats are good tho, I eat oats and spelt mixed for my breakfast.

So my advise to you is try to eat 200g of black eyed beans or a pinto/black eyed mix 4 days a week, you should see a dramatic improvement due to butyate production within 2 to 4 weeks and then a much better level after 3 months. Black eyed beans are super low oxalate, pinto not so much, just fyi.

Thank you! this is me right now: (as you can see I have a long way to go to get it down to 30% 😭

 

[Sequestered Hog]

I dont think he even has my address (?)

Did you find somewhere for the aciclovir? I'm struggling to find somewhere!